Sydney was born in August 2006 and appeared to be developing normally until five and one-half months of age. She woke up one night, went limp, and stared off to her side. From that moment on, life as we knew it had changed. She went through all the standard tests: EEGs, MRIs, etc. Although the MRI was clear, the EEG showed disorganization in the brain and she was diagnosed with intractable epilepsy. After only three short months, her neurologist told us we needed to go to a pediatric epileptologist in Minnesota. After numerous medication changes, an intense and lengthy trial of the ketogenic diet, and nearly four years of traveling to and from Minnesota, we decided to seek treatment locally since we had exhausted all options other than surgery, which with her type of epilepsy was not a viable option.
Since changing neurologists, Sydney has tried an additional two medications and had a Vagal Nerve Stimulator (VNS) implanted. After constant adjustments with the VNS, we have still seen no seizure reduction. Sydney is currently on three different types of medication, none of which are approved for children and many which have serious long term effects. She is still having one to three seizures almost daily lasting anywhere from two to twenty-five minutes. She has not gone for more than ten consecutive days without a seizure in the past five years. Her current meds are not holding off her seizures, which for the past four years have just been upon waking, and sadly she has started to develop a different type of drop seizure that is not upon waking; it happens randomly throughout the day and is far more detrimental to her safety. Our hearts break for her with each seizure, knowing how it must make her feel and knowing any seizure can be fatal, and that we could lose her at some point. Not a day goes by that we do not think of seizures. We live in constant fear that they will continually progress, get longer in duration, more frequent, or at random times of the day. Will she fall and hit her head? Will she fall down the stairs? Will she stop breathing? It is a constant roller coaster of emotions!
Sydney is now nine years old. She is a shining star in our, and many other’s lives, and we cannot even remember what life was like before she came into this world. Despite the daily obstacles she faces, she is a fighter! She remains nonverbal, more than likely due to the damage to her brain after thousands of seizures. However, this spunky little girl finds ways to be heard. Whether it is attempts at verbalizing, using sign language, using her communication device, or physically pulling you to what she wants, she will find a way to get through to you! She loves to ride horses and brings smiles to the faces of everyone there when she walks into the stable and lets out her “horsey sound”. They know when Sydney has arrived! She also loves music. She loves to be sang to, listen to music, and watch music videos–especially The Laurie BerknerBand’s “We Are The Dinosaurs.” EVERYONE who knows Sydney knows the words to that song!
We are lucky to have Sydney in our lives. We like to think about her situation in as positive a way as possible.Her situation is not a burden; she is not a burden. She is a blessing and has taught us far more about life than we could ever imagine. She helps ground us and makes us realize what is really important in life and we love her beyond words!
A special thank you to Hannah Verene Photography for these images.
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